Posted by: rajagainstthemachine | February 16, 2010

Trials and Tribulations

I once read that cancer was a rollercoaster. That was two years after my first surgery, two years of being clean or “NED” (no evidence of disease). At the time, just a few months out from our Wedding, everything seemed sanguine. Cancer was becoming a long distant memory,  but somewhere inside the sentiment rang true.

The most important lesson I have learnt from this disease is to take one step at a time. This is my mantra.

No-one knows what the future holds for them. If I were to take snapshots of my life – the pivotal points – I could never have joined the dots. The journey is full of twists and turns. Unpredictability is the norm, but it has taken me to amazing places – some beautiful, and others, desperate, leaving me clutching at little moments: things that made my friends laugh; my face pressed into the nape of my Mother’s neck, looking over her shoulder;  my fingers mimicking Kavi’s, poised, then our palms pressed together. Warmth.

You might sit across from me in the subway. The benches are hospital blue. Little pools of hospital lighting illuminate the advertisements staring down on us, English, Spanish, Spanglish. The carriage rattles on the tracks, in a monotonous rhythm, somewhere on he continuum between calm and chaos. Our eyes would meet for a moment: over the ridges of our magazines. And you would never know.

One step at a time. In the Bocas del Toro, I sat on the daybed, looking out over her, sleeping peacefully in a hammock. Sunken sunlight, half-illuminating the panorama. The palms swayed in the evening breeze. Four pelicans circled over the lagoon, they swept towards the surface, and then, making a sudden upward arch, dove headlong into the water. They rose up, fed and watered. They repeated the procession. I couldn’t find the moment to ask her, then. I didn’t have the heart.

Two days later, I’m back in New York – 53rd and 3rd – Memorial Sloan Kettering Hospital. This is where we gather, for our waiting. People like me. We have made waiting an art form;  waiting is a part of us. And then your name is called, your heart starts to beat a little faster, and after some more waiting, in a hidden away room, you get the news. It is back.

Outside, our paths might cross on the pavement. We stutter, left, right, left, as we try to avoid each other in the crowd. We exchange a fleeting glance. And you would never know.

One step at a time. I start to sketch out an image of the path ahead. Half scribbled notes, questions to ask at my next appointment. Methodical internet searches for clues, signs. Then my concentration is broken by a phone call – I have to get to the clinic today, there is a clinical trial that I can join. Yesterday, there was nothing on the cards; today, a wonder drug?

Two days later, I am lying in a hospital bed. They present me with the little devils. Ten innocuous looking pills, ten days (appearances can be deceiving). 26,700 milligrams of hope, coated in nausea inducing yellow film. It is a struggle to get them down, and a bigger one to keep them down. The nausea takes hold of me, so I close my eyes and let the world keep spinning. I spiral into a slumber.

Yoghurt helps me get through days one to eight. Sheeps clothing for the wolves, masking their insidious taste. At irregular intervals of hours and days, I present the veins in my forearms to nurses – alternatively, left and right.  My blood, deconstructed, the raw data for things to come, years ahead.  My contusions, hopeful signposts to better things that lie ahead.

Day nine. My tongue is coated with a thick white film, my throat is parched dry. The nausea has consumed me. Now I sleep with a bucket beside my bed. In the middle of the night, I am hunched over it. I have nothing to give but green bile, from the deepest pits of my stomach.

Day Ten. It’s over for now. Everything tastes of nothingness. Even water has stopped tasting of itself. But it’s time to come up for air.

Respite for eighteen days, and I start to bounce back.  Eighteen days fly past like eighting seconds. Time enough, though – for me to feel like me again. To share, and be a partner, a friend, a son, a brother. To be a listener.

And then it’s time again. Ten pills, ten days – little devils. Sweet Medicine.

A few hours later, I am lying in a bed at Urgent Care. I am the devil incarnate, burning a fiery red. My back is scorched, where the enraged histimines flay my skin furiously from the inside. The crimson tide advances up my throat. I have the itch, like an addict going cold turkey. It sends my legs into jerky movements. My black hair is scattered on the white of the pillow, like ashen debris. This could be the wonder drug.  I close my eyes and let the world keep spinning. In the distance, I hear a trailing voice; “I think you just bought yourself off that trial …”. 

Cancer is a rollercoaster.  The game is always changing; the challenge is to stay ahead of it.  To never choose ordinariness; to never let it stop you from being yourself, from giving yourself.  What you have will always be yours.

So now, I am waiting. Waiting is part of me. Soon my name will be called, and my heart will start to beat a little faster.

And you. You would never know.

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Responses

  1. Rajiv, We are gaining time, we just have to hang around 53rd/3rd, Binney St… and one of these days the drug we try will be the One. I’ll let you know next week what my next step will be. Keep writing. Your posts are always beautiful and inspiring.
    your liposarc friend,
    Elsa

  2. I saw your blog about this drug from another blog, “living with sarcoma”. I spoke to someone in Denver, Colorado about this trial and she told me it would start at 1400 mg, but your blog is much higher 26,700 milligrams. I am just trying to figure out if it is way behind here compared to in NYC. Any information would be much appreciated. I hope you found something that worked better for you.

  3. all I could say as I read was wow, hope you understand the kind of wow it was, thank you for your honesty,,,


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